Monday, February 4, 2013

The mentally ill in India …whose responsibility are they?

The mentally ill in India …whose responsibility are they?

I was chatting with a friend of mine who unburdened herself to me about her travails in managing the care of her mentally ill brother. My husband & I had a heated argument after the call, debating about who should shoulder the burden of his care. My husband thinks that my friend should walk out of the house and stop caring for her ill brother. He believes that women in India always end up in this caring and nurturing role, sacrifice their time and energy and at the end of the day get nothing…they don’t get thanks, they don’t get  recognition  and  NO one offers a helping hand.

 I, on the other hand argued that someone in the family has to take care of this guy and it happens to be my friend.

This argument, made me pen my thoughts about this issue.

In this article, I am talking about the mentally ill in middle class, urban India who are continue to be symptomatic and dependent. My observations are based on the families of mentally ill whom I have known personally for two to three decades. This is an issue for which there seems to be no clear solutions.

Before I discuss the issues, I would like to present  a brief snapshot of  the mentally ill & their families.

(1) An unmarried mentally ill lady about 50 years old, living with her mother, brother, sister-in-law and 2 nieces. She has 2 other siblings who are settled abroad. She has been suffering from mental illness from her teenage years and though on high doses of medication, she exhibits severe behaviour problems at home. The doctors cannot hike the medication as she is on high doses already. She refuses to get admitted to a hospital for treatment or admitted to a half way home or rehabilitation centre. The family cannot make her. She is verbally and physically aggressive, spends a lot of money(she is not earning), is paranoid, impulsive and is such a menacing presence in her home that the other people in her house, suffer a lot. They fear her and do what she says in order to buy peace.

(2) A married mentally ill man in his 40s, is living with his parents, wife and oldest sister who is single. He was running a business in his 20s and 30s but as his illness got worse, he had losses in his business due to poor management and he stopped his business. He was staying at home in a very passive manner for a few years when he was on medication. He was medicated by his family, without his knowledge as he would not take medication willingly. Before the readers from the advanced countries scream about his rights, let me tell you that this is a common practice in India, which even the trained professionals (psychiatrists) recommend, if the client is unwilling to take medication and he is physically aggressive. Secretly medicating is the only practical option for families when the mentally ill person is non-compliant with medication, is physically stronger or is in a position of power in the family. This mentally ill guy has one more  sibling, who is married, has a child and living with spouse, in another part of the same city. This sibling is not involved in his care in any way.

(3) A mentally ill single lady in her early 50s,unemployed and  living with her mother and sister. She has never been diagnosed until recently i.e. when she was in her forties. The doctor did not give a diagnosis but gave her tablets and her behaviour, whether due to the tablets or other reasons, has gradually improved. It is difficult to say if she has psychosis(no evidence of hallucinations and maybe she has some delusions) or a personality disorder or whatever. She is the second of eight daughters born to a lower-middle-class businessman. Years ago, she was told by an astrologer that she will marry a rich person and subsequently she refused to marry all the prospective bridegrooms her parents showed her as she was waiting for ‘the rich guy’ the astrologer had predicted.  She spent her time at home, refusing to do the household chores, refusing to study further or get a job. She sat and waited for the rich groom, who never came. Meanwhile, her dad did not try to get the other daughters married …he wanted to finish his second daughter’s marriage, before going on to the third. After waiting for many years, and after the father’s death, the other girls found men on their own and married. This mentally ill lady at some time in her late twenties started showing behaviours which her exasperated sisters attributed to jealousy and meanness. She would grab the newspaper and sit with it until the sisters left for work or college, refusing to give it to anyone else. She would finish all the water which the sisters had carried up in pots from downstairs and refuse to bring up any water. This was not considered as mental illness at the time.

She remained at home, considered troublesome by her sisters and she seemed to gradually improve after 20 years, with threats, cajoling and tablets which the doctor started a few years ago. She is now doing a few chores at home and not being aggressive or mean.

Of the three cases here, two are women and one is a man.

The two women are single while the man is married.

The two women have never ever worked while the guy ran a business for a few years. But he has had severe losses and his family believe that they would have been better off if he had not done business but sat at home idle. He had no sense of judgement and shrugs away the losses and demands money to start a ‘new’ business. Fearing his wrath, the family gave him money initially but now they have no money to give. He is now taking loans which he will never clear.

All three are currently unemployed.

All three are living with their families and supported by their families.

All three are symptomatic and it is very difficult for the families. There are fights & tensions on a daily basis and the worst part of it is that in the first and second cases, the families live in constant fear. Fear that the mentally ill person will harm them. In the first case, the lady has fractured her mother’s limbs on more than one occasion. In the second case, the guy has assaulted his mother and backed off from assaulting his sister when she threatened to call the police. This is an empty threat but it worked…the police do not respond promptly, when called, in India.

Two of them i.e. the first and second are a huge financial threat to their families as they spend money like water. The guy is a severe threat financially as he takes loans, spends money and his family has to clear the loans, though they have limited income.

In the second and third cases, growing children were not affected by the mental illness in the family as there were only adults when the mental illness affected the two people. Sadly, in the first case, two nieces of the mentally ill lady, were exposed to her terrible behaviour from birth to adulthood. As they are still in the same house, they continue to be exposed to their aunt’s terrible behaviour and exposed to the strained relations ships between all the family members at home. Thanks to God, the two girls appear to be resilient but I am sure, that this exposure has taken it’s toll on their relationships, personality development, academics and every aspect of their life. I can go on and on about the damage caused to children who grow up in an environment fraught with tensions where just one person happens to be mentally ill but I am not going into the details here.

The people who are living with these three mentally ill have paid a heavy toll in so many ways.  For example, all three families are on the brink of financial disaster, especially the last family and the first. Before you jump to conclusions about cost of treatment, let me explain…it is not the cost of the medicine or treatment. It is the financial messes caused by their symptomatic behaviour of spending money and taking loans. And sadly, in the first family, the sister-in-law of the mentally ill lady is so enraged by the spending habits of this mentally ill sister of her husband, that she too spends recklessly! The mother-in-law who is financially supporting this entire family (her son who is abroad sends her money) is mum as she cannot stop her daughter who is mentally ill. And when she cannot stop her daughter from reckless spending, she thinks, it is wrong to question her daughter in law when she spends.  This gives you a flavour of  some things which goes on in the families of the mentally ill. But the extent of the problems is not revealed even in the best surveys and studies, as families do not report things during surveys which cast them in a bad light!

In terms of relations ships too, there is so much damage, it is difficult to measure the extent of it!

 The daughter-in-law in the first family has anger about being in the same home as her mentally ill unmarried sister in law, who is disrespectful to her and paranoid. She is a housewife and therefore financially dependent on her husband; divorce is not an option for various reasons.

In the second family, the mentally ill man has terrorized his family; the family’s sole aim is avoiding  his anger outbursts and if possible,  preventing him from taking new loans and opening new businesses.  Other goals are second priority in their lives such as attending to their own interests and hobbies, their own work, health or social relations ships. Due to the stress of living with this mentally ill, the relations ships between the family members has become emotionless/bitter. My friend feels zero love for her mentally ill brother, her respect for her mother is decreasing as the mother does not support her or respect her for her efforts in managing her brother and also her dementing father. My friend is especially bitter about the second class treatment she got from her parents as she could not get married and their refusal to give her, her share of the property as she is female. The wife of the mentally ill guy, lives in this house, going to her work place daily, and helping to look after her husband when she is at home. She does not discuss or share much with the family of her husband. They are virtually 5 people, living under one roof , with no affection binding them. They are under this one roof together because, they do not have the economic means to escape.

  In the third family, the sisters of the mentally ill had a lot of anger towards her as they could not get married at the right time because of her; they also  had anger towards their father and so on.

Burden of care

In Canada, where I am living at present, the burden of care of the mentally ill falls on the government. I have seen mentally ill, who are unable to be gainfully employed, get a stipend from the government which enables them to live independently.  This is for the duration of the illness and as major mental illnesses, last for life, they get this financial support for life. This money is enough for them to rent an apartment, buy food, have a phone and travel within the city. They get free treatment and free medication and free hospitalizations. For those, who are unable to live on their own, there are apartments which are staffed by trained personnel.  I have also seen mentally ill who live with their families but the burden on the Canadian families is much lesser than families in India. Some mentally ill, who live with their families, give a portion of the money they receive from the government, to their families and so do not drain the family financially. Medication and healthcare  is free and so that is not a problem at all. There are drop in centres and centres where they can work or attend a day program, receive free counselling, etc. When a mentally ill relapses or becomes violent,  all that  the family has to do is call 911 and the police/ambulance  arrive at the door step and escort the mentally ill to the hospital.  In Canada, a mentally ill can be asked to leave his house if his presence makes it unsafe for others and there are places where he can stay, without ending up on the streets. There are various organizations providing, with government funding, shelters with different levels of support, for the mentally ill.

The parents of the mentally ill or his siblings are not as burdened as the siblings or parents of the mentally ill in India. What about the mentally ill in India  who has no family ? I shudder to think of what happens to them.



The things which make me feel angry, guilty, helpless and frustrated about the things in India about the care of the mentally ill:

The Indian government is not doing anything to help the families take care of the mentally ill…in terms of financial help.

The parents of mentally ill, try to get their mentally ill off-spring  married , without revealing about the mental illness to the bride/groom. If the marriage takes place, the unsuspecting bride/groom is supposed to take care of this person for life! Some of them even have children and the problems continue. These days, the duped parties, resort to divorce and do not stick to the mentally ill spouse for life..

The parents of the mentally ill, worry about who will take care of the mentally ill children, when they die. As many mentally ill and mentally retarded and even unassertive ‘normal’ children have had their properties stolen after their parents die, this is a huge worry.

Some siblings, have feelings of affection or at least a sense of duty or feelings of guilt, and they look after the mentally ill sib, even while grumbling and receiving flak from their spouses. But there are a few who are selfish and refuse to care for their mentally ill sibling and the mentally ill sibling may end up on the street as a destitute or wandering lunatic.  I have seen this happen to one lady of a middle-class background and it broke my heart to see her in rags on the streets. I have nothing to do with it but I still feel shame about my helplessness to do anything about it.{ I saw her( a mentally ill lady from my neighbourhood) on the street in Bangalore, when I was travelling by bus…she was in rags and I went home and cried and cried but did not know what to do. I was a child then} I get angry with the siblings who refuse to take care of the mentally ill sibling. There are of course, various levels of caring or refusal to take care. Some sibs help out financially but do not want the mentally ill in their home. So sibling A houses the mentally ill while sibling B sends money to sib A. Sib C may take care of the hospital visits. The spoilt or selfish sibling may do nothing.

There are not enough centres where the mentally ill can spend time, either gainfully employed or doing volunteer work. Keeping the mentally ill engaged, daily, at least 5 days a week, for at least 60 years of their life as mentally ill and unemployed is a daunting task for any family. The Indian government has to do something about opening centres for the mentally ill who are mildly symptomatic and unemployed. Their number is in the millions.  The free time the unemployed mentally ill have is the biggest cause of their getting into police troubles, they troubling the families and relapsing into illness.

Many of the mentally ill need a lot more besides medication. The families need education about the illness. Many families, do not understand the mentally ill and have various superstitions, wrong beliefs about the causes and treatments of mental illnesses, many treat the mentally ill in brutal ways due to anger, frustration and ignorance and this leads to the mentally ill becoming aggressive or being crushed. Many families and the ill, need counselling, therapies, etc.

Work to remove stigma needs to be done.

There is a need for the government to develop a system in every village and city which will help in the smooth admission and treatment of the uncooperative mentally ill. Right now, it is a huge burden for the families of the violent mentally ill to get them treated. They have to physically tie up the patient, or beat him/her into submission and drag him to the hospital. In families, with inadequate support like the second family in this article, the patient, holds his family to ransom and wreaks havoc within the family by terrorizing them.

Corrupt doctors in government hospitals prevent access to free care for the poor patients and their families. These shameless doctors should be kicked out of their posts and honest doctors should be employed (Ha Ha).

There should be more psychiatrists or the GPs should be trained to treat the mentally ill.

I hope that the government of India, by some miracle develop a conscience and do the needful for the mentally ill in India.

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